Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation.

OBJECTIVE: The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients. METHODS: Thirteen semi-structured interviews were conducted in patients with hereditary hemorrhagic telangiectasia. RESULTS: Qualitative grounded theory analyses were performed using the participants' transcripts and revealed the following six categories: Impact of physical symptoms on daily life, Quality of family and social life, Emotional and psychological outcomes related to the disease, Knowledge having a severe disease and coping strategies to manage such disease, Recognition of the disease by professional colleagues and superiors, and Knowledge and understanding from health professionals in medical care. CONCLUSION: The definition of quality of life that emerged from the participants' transcripts was essentially related to health. Individuals with hereditary hemorrhagic telangiectasia mainly focused on the physical, psychological and emotional impacts of the symptoms and their consequences on professional life and social activities. Family relationships were also highlighted in the participants' transcripts. As such, HHT patients used coping strategies to manage their disease. Finally, a particularly salient issue referred to the lack of knowledge concerning the rare nature of this disease and the ensuing inherent sense of misunderstanding.

Barriers to venipuncture-induced pain prevention in cancer patients: a qualitative study.

BACKGROUND: Procedural pain reduces the quality of life of cancer patients. Although there are recommendations for its prevention, there are some obstacles for its management. The purpose of this study was to analyze the barriers to procedural pain prophylaxis in cancer patients reflecting the views of the nurses. METHODS: We used qualitative methodology based on semi-structured interviews conducted with nurses, focusing on practices of venipuncture-induced and needle change for implantable central venous access port (ICVAP) pain management in cancer patients. A thematic analysis approach informed the data analysis. RESULTS: Interviews were conducted with 17 nurses. The study highlighted 4 main themes; technical and relational obstacles, nurses' professional recognition, the role of the team, and organizational issues. Participants understood the painful nature of venipuncture. Despite being aware of the benefits of the anesthetic patch, they did not utilize it in a systematic way. We identified several barriers at different levels: technical, relational and previous experience of incident pain. Several organizational issues were also highlighted (e.g. lack of protocol, lack of time). CONCLUSIONS: The prevention of venipuncture-induced cancer pain requires a structured training program, which should reflect the views of nurses in clinical practice.

Perception of naturopathy for female patients with metastatic gynecological cancer: A qualitative study.

OBJECTIVE: Women with gynecological cancer have been reported as very high users of complementary medicine. The goal of our study was to explore the perceptions of patients with an advanced gynecological cancer who use naturopathy as complementary medicine. We were looking more specifically at patients' opinions on the effect of naturopathy on their quality of life and its relation to conventional oncological treatments. METHOD: This pilot qualitative study used semistructured interviews, and data were analyzed using grounded theory and qualitative methods. The main criterion for inclusion in the study was the use of naturopathy as a treatment complementary to conventional cancer treatment for gynecological metastatic cancer on the oncology day care unit. RESULTS: Six patients were included until data saturation. They express the physical and psychological impact of treatments and disease. Usually, chemotherapy is perceived as something that may be curative or may at least lead to remission. Unlike conventional treatments, naturopathy is not perceived as drugs, and it is seen as a way to relieve symptoms, improve well-being, and as a way of enabling them to take an active decision-making role in their care journey. Patients want to have more information about naturopathy. SIGNIFICANCE OF RESULTS: This study suggests that patients are aware of the benefits of a specific cancer treatment as chemotherapy, but they resort to naturopathy for symptom control, and also to take a more active role during treatment.

Family caregivers' perceptions of depression in patients with advanced cancer: a qualitative study.

OBJECTIVE: Depression is a serious issue for cancer patients, resulting in impaired quality of life and probably shorter survival. However, many cancer patients with depression are not treated because of the difficulties in identifying depression within this population. Our study aimed to examine caregivers' perceptions of depression among advanced cancer patients. METHOD: This qualitative study employed semistructured interviews, and we analyzed data using grounded theory and qualitative methods. We recruited caregivers from our palliative care unit (PCU) at an academic medical center. RESULTS: We interviewed a total of 15 caregivers. Cancer patients' caregivers had a good theoretical knowledge of depression but also acknowledged that, in the context of cancer and because of their relationship with the patient, identification of depressive symptoms could be challenging. They considered themselves as partners in the patient's care with a supportive role. However, by assuming the role of partner in patient care, caregivers exposed themselves to emotional difficulties and an increased need for support and information. SIGNIFICANCE OF RESULTS: Our results suggest a significant impact of depression in advanced cancer caregivers, and it is therefore crucial that healthcare professionals develop educational programs targeting cancer patients' families as well as specific interventions to minimize the impact of the burden of patient care on caregivers.

Nurses' perceptions of depression in patients with cancer.

OBJECTIVE: Our study aimed at examining nurses' perceptions of depression in cancer patients and their role in its management. METHOD: We employed questionnaire-based semi-directed interviews. Participants were asked to classify 22 symptoms (related and specific to depression in cancer patients, related but not specific, and unrelated) as "very important," "important," "less important," or "not important" for the diagnosis of depression in cancer patients at two different timepoints (baseline and after a video education program). They were also asked to complete a questionnaire exploring their perceptions about depression and of their role in its systematic screening. We recruited nurses caring for cancer patients from four different departments (palliative care unit, hematology, medical oncology, and thoracic oncology) at an academic medical center. RESULTS: We interviewed 18 nurses and found that they had a good general knowledge of depression in cancer patients, with the majority of them being able to distinguish specific and important symptoms from nonspecific symptoms. Some nurses considered depression as a second-line symptom, and most did not employ a screening tool in their daily practice. All considered that they had a role to play in the management of depression, even as they acknowledged lacking specific training for that task. SIGNIFICANCE OF RESULTS: Our results suggest that limited resources­especially lack of training­affects nurses' ability to correctly manage depression in their cancer patients.

Family conferences in palliative care: a survey of health care providers in France.

CONTEXT: Family conferences are conducted to assist with end-of-life discussions and discharge planning. OBJECTIVES: This study describes the current practices of family conferences in palliative care units (PCUs) in France. METHODS: A cross-sectional descriptive survey was sent to each PCU in France (n = 113). Members of the interdisciplinary health care team (palliative care physician, nurse, psychologist, and social worker) who were active in each PCU at the time of the survey were asked to respond. RESULTS: Two hundred seventy-six of 452 responses (61%) were obtained from members of the health care team in 91 units (81%). Two hundred seventy-two of 276 health care providers (HCPs) (99%) reported conducting family conferences in their clinical practice. Only 13 participants (5%) reported that they followed a structured protocol. Most respondents completed the questionnaire: palliative care physicians (n = 225; 82%), nurses (n = 219; 79%), and psychologists (n = 181; 66%). The three primary goals of family conferences were to allow family members to express their feelings (n = 240; 87%), identify family caregivers (n = 233; 84%), and discuss the patient's plan of care (n = 219; 79%). The primary reasons for conducting a family conference were: the patient's illness was terminal (n = 216; 78%), family caregivers requested a conference (n = 208; 75%), or terminal sedation was required (n = 189; 69%). One hundred six of 452 HCPs (38%) reported that patients were not invited to participate. The primary indications and goals for a family conference were significantly different among the four health care disciplines. CONCLUSION: Most HCPs in our study conducted family conferences. However, most of the family conferences had no structured protocol, half of the participants preferred no patient participation, and a significant variation was noted in the primary indications and goals among disciplines.

[Audit: medical record documentation among advanced cancer patients]. / Audit : traçabilité de l'information dans la prise en charge de patients atteints de cancer en phase avancée.

Medical record documentation of cancer inpatients is a core component of continuity of care. The main goal of the study was an assessment of medical record documentation in a palliative care unit (PCU) using a targeted clinical audit based on deceased inpatients' charts. Stage 1 (2010): a clinical audit of medical record documentation assessed by a list of items (diagnosis, prognosis, treatment, power of attorney directive, advance directives). Stage 2 (2011): corrective measures. Stage 3 (2012): re-assessment with the same items' list after six month. Forty cases were investigated during stage 1 and 3. After the corrective measures, inpatient's medical record documentation was significantly improved, including for diagnosis (P = 0.01), diseases extension and treatment (P < 0.001). Our results highlighted the persistence of a weak rate of medical record documentation for advanced directives (P = 0.145).

[Depression and advanced cancer: agreement between different screening strategies]. / Dépression et cancer en phase avancée : concordance entre différentes stratégies de dépistage.

Depression is a frequent problem in advanced cancer patients. However, there is no systematic screening for depression in the majority of cancer center resulting in underdiagnosed depression among cancer patients. The main objective of this study was to assess the level of agreement between self-reported depression by the patient and the physician and nurse assessment using the same tools. One of the secondary objectives was to estimate the possibility of a systematic and repeated (at one month) assessment. We used two scales for depression screening: the Brief Edinburg Depression Scale (BEDS) and the depression item of the Edmonton Symptom Assessment System (ESAS). Twenty-nine patients were included and eight of them (28%) had a BEDS score >6 and benefited from the initiation or modification of their antidepressant treatment. At visit 2, 15 patients were seen again and BEDS score was found ≤6 for all of them. A moderate concordance was found between assessment using the BEDS by patient and physician's (κ=0.519) and low agreement was found between physician and nurse regardless of the tool used (κ from 0.071 to 0.313). Researches with larger cohorts are now needed to confirm the benefits of depression's screening in this frail population and also to assess available strategies.